Ever heard of PMR???????

[dumplie]

Hi everyone out there,

Just wondering if anyone has ever heard of PMR? After a number of blood tests, my GP tells me that this is another condition that I can add to my ever growing number of illnesses. He explained to me that this is a form of rheumatism that affects the muscles instead of the joints.

All I can tell you is that it is extremely painful and does not improve with the use of pain killers.

Does anyone else suffer with this condition and if so, what treatment do you use?

Any help is very much appreciated......Thank you......Janine

[ReneeNZ]

Hi Janine! I am something of a non-expert around here but PMR is probably Polymyalgia Rheumatica - I just "googled" it and came up with this site http://www.netdoctor.co.uk/diseases/facts/polymyalgia.htm!

I always take a look at any new suggested diagnoses which appear on the forum because I am not diagnosed yet so I check to see if I can relate to anything mentioned. Must say that I fit very neatly into PMR myself except that, although I suffer a lot of pain which seem to be muscular, my blood tests came back showing that I have NO inflammation - and negative for Rheumatoid Arthritis!

Still waiting for rheumy appt when I hope (silly me :( ) that something may start to make some sense.

Good luck with it all - isn't it great to have this fantastic site full of informed people to turn to?? I expect someone far more knowledgeable than myself will turn up soon to provide more clarification :flowers:

[Lily]

Hi Janine and welcome,

I just read your other post about having diabetes and being on Pred. You say the Plaquenil has not helped you at all I am wondering how long you have been on it?

Polymalgia Rheumatica can mimic some other conditions and has some features similar to some of our Lupus complaints. Either way the Prednisone should help this problem - have you seen improvement since starting the pred in your PMR symptoms? If there is no improvement then it's possible its another condition with similar symptoms. It would be hard to determine a diagnosis of PMR if you already have Lupus I'd imagine because the only indicators are a raised ESR and CRP (to my limited knowledge), both of which can sometimes happen in Lupus. So I'm a bit puzzled by that especially as the symptoms can be similar to some lupus ones.

These days many docs try and wean us off steriods and use other methods to control our Lupus, mainly because of the side effects of long term pred use and in your case having diabetes I should think it's even more crucial to look at other alternatives such as the immunosuppressants. I hope your doctor will explore these options with you and in the mean time I hope that by raising your insulin you can at least get some relief and stay on the pred until they find another suitable regime.

Good luck and let us know how you get along.

love
Lily

[dumplie]

Hello again,

Thank you so much for your kind replies. I am so grateful to you. This site is like a breath of fresh air to me as it is so nice to have other sufferers out there who can understand and sympathise.

My last ESR score was 45 and that was after being on the steroids for three weeks. My lupus does not seem to be responding to anything right now and that includes those awful injections - hydrocortozone (spelling mistake again). The PMR is a recent diagonis and thankfully I am seeing the rheumy on monday (6/6) so I shall be interested to see what he makes of it all. I am starting to get worried each time I visit the GP as I always come away with another complaint - last week I was told that I am going to probably need a double hip replacement as the damage is so bad. Not bad for a 38 year old. PLEASE tell me it is not just me.

Thank you so much again and I am so glad that I have finally found somewhere to come to to get advice.......Janine

[Lily]

Hi Janine,

Good luck with the Rheumy, I'd be inclined to take more notice of what he says about it all than your GP. GP's are usually a bit out of their depth when it comes to connective tissue diseases and not many of them are up to date on diagnosing or treating them. So if it was the GP who mentioned the hip replacement possibility (((((((Janine)))))))) then ask the Rheumie his take on it. Also ask what other med options are available to you that are steroid sparing and wont give you problems with your diabetes.

The reason I asked how long you'd been on Plaquenil was that at the minimum it can take 3 months to work, for me I'd say longer, although I did see improvement during the first 3 months, more after 6 and definitely it had kicked in fully after 9. But then I'd been sick for quite a long time before starting it so didnt expect an overnight cure-all :)

Make sure you write down all your concerns for the Rheumy and relay to him just how this is affecting your life. That way they can tailor your meds to suit your needs, we are all slightly different in what works for each of us, just as our diseases present differently in each of us.


Good luck and let us know how you get along :flowers:

love
Lily

[dumplie]

Thanks agaon Lily,

I shall certainly put a list together for monday. Hopefully the rheumy will be able to offer some form of alternative for me.

I am due to have a bone density at the end of the month too so this should help my rheumy work out the best way forward.

I have been on Plaquenil since I was first diagnosed - about 8 years ago. It started to work quite quickly and then the effects of the medication wore off. I have experienced the same problem with the pain killers and anti inflammatories. Still, I am sure there are more out there.

I will let you know how I get on and thank you for your kind words and advice.

Janine